Specialists say it’s reflux but is it? Help

[Anonymous]

My daughter (7 months old) whose was diagnosed with reflux and MSPI is on medicine (since 2months old) has “episodes” where the formula (a small amount like a really bad runny nose) will come running out her nose. Sometimes this does not bother her but most of the time she chokes and can’t breathe. (I think the formula is coming out her mouth and nose at the same time, but again a very small amount) After 90% of the episodes she screams for at least 5-10 minutes. There is no consistency to when this happens. Sometimes it happens right before a bottle, sometimes after, sometimes between bottles, sometimes multiple times a day and sometimes multiple days apart. Also about 98% of these episodes happen when she is in the upright position. I’ve been told by her ped and 2 GI specialists that it’s just reflux. One GI wants to heavily medicate her and the other wants us to stop the meds altogether. I have a hard time agreeing with the diagnosis of reflux because no matter her dose of medication (low dose or normal dose) or the medicine itself (started on Zantac and she is now on Prilosec) it still happens and doesn’t seem to be getting any better. She started on breast milk then was switched to soy and is now on Nutramigen Lipil. These episodes have still been happing throughout regardless of food choice. I’m hesitant to mention her other 2 things because the second that I do “It’s reflux” but I will anyway. When she has had episodes while I’m holding her or she is sitting in my lap I can feel and sometimes hear them coming. It feels like light rumbling or a gas bubbles in her chest (not sure how else to describe it). She also has a bit of back arching when she is laying down, in the car seat and in her highchair but my husband says that she just doesn’t want to be in that spot or position at that point in time. Most of the time I agree with him but there are sometimes it looks likes there is something hurting her. We go through this cycle: She is feeling pretty good for a week then it gets really bad, they up her meds then the cycle repeats. (we have been repeating this cycle since 2 month old) Is this really reflux? If it is why is it not getting better and is always getting worse? I’m so confused! I feel there is something else going on but don’t know what direction to go in next. Any advice would be greatly appreciated.

[Anonymous]

okay my first thought is that it does sound like reflux, but more likely silent which means she is getting the burn 2x. I would #1 try a different formula (elemental like Neocate/Elecare/Nutramigen AA) to see if she is reacting to the milk proteins, sometimes regular nutramigen doesn’t help. She maybe MSPI (milk/soy protein intolerant). If after a few weeks on the new formula you don’t see any improvement then I would look at changing to a different med… speaking of is her prilosec a compound? if so it may not be made correctly and if that is the case then I would start with a different med first b/c compounds are notoriously made wrong. Read Lauras groupie intro and then Prevacid 101 and hopefully those will give you additional insight. I haven’t luckily had to deal with reflux now for 3 yrs so I am a bit rusty on everything but that is what I would do if I were in your shoes. HTH.

[hellbennt]

how Neocate & Elecare work: https://www.infantreflux.org/forum/forum_posts.asp?TID=6013

MSPI ‘Main’ page:

https://www.infantreflux.org/forum/forum_posts.asp?TID=2697

best EXPLANATION OF FOOD ALLERGIES/INTOERANCES and their RELATION TO REFLUX that I have found, to date: 2nd post: https://www.infantreflux.org/forum/forum_posts.asp?TID=2697&PN=2

I have a LOT to say and most of it’s here, in a link called ‘groupie intro.‘
it’s looong but TRULY will help you- read through it, refer back to it, scroll through it/skim through it. You’ll find yourself coming back to it!
https://www.infantreflux.org/forum/forum_posts.asp?TID=853)

Prevacid 101;

scroll to the last page of this post, (it’s actually also about other PPIs like prilosec, too)
https://www.infantreflux.org/forum/forum_posts.asp?TID=1936&PN=0&TPN=1

[Author]

Posts